If you dont know the full ins and outs Im not going to explain it today or on facebook (feel free to ask but i will not post it on social media) – basically i got a diagnosis last year that as a family was hard to process, and although it made sense, it wasnt easy to accept or get our heads around, mum especially. And then after that, there was even more that went on that was incredibly challenging to deal with. Im so lucky to have my mum because although our lives has been a bit difficult (and days continue to have scary moments) she kept it together and continued to fight with me for the treatment, support and Help i needed.

She works full time, comes home and deals with me- often ive been on the floor in a heap or in pain and i go “muuum i need to go somewhere” (somewhere being a hospital). Then if we go to hospital of our own occord or ambulance, We then are often there till the early hours, or im kept in, which still means mums done a full day at work, and then is up till all hours. Yet she doesnt ever make me feel like a burden.

We are big on “normality” in our house because our lives are far from normal, so we laugh and joke as much as possible, We muck about and we have banter. We create happy memories in the dark days.

We argue like any other parent and child dont get me wrong we wind each other up.

But were incredibly close and have a very special bond.

Mumsie is one of a kind. I mean how many people can say their mum dresses as a blueberry or giant peach.

I get very anxious about stuff and mum eases it. Sometimes its just because shes a distraction – like when she starts singing songs from rhyme time.

Mums name means sword.

Mine means little rock/stone.

She calls me her rock,
And i call her my secret weapon.
Because you dont mess with the mamabren! They call her dragon lady for a reason!
Her eyes go red when shes angry.

It cant be easy being my mum. My mum is incredibly strong and i honestly dont know where she gets her strength from. The woman deserves a medal for putting up with me!

The email came through the Monday after she had died with a message which simply said ” Enjoy the memories and spread the giggles beanie you know what to do “. I didn’t understand until I received the letter yesterday

Each song that is on the list has a story behind them. I sort of figured it would bring some sort of smile to those few people that knew faithy if they knew WHY these songs are significant.

Sex Bomb – Tom Jones.

We had quite a few physio sessions booked in for the same time. and as with most hospitals, we’d be waiting a g e s for our appointments.

one time, our physios were both almost an hour and a half behind schedule.

So in a corridor style waiting room, it was just us and her mum. I had to keep her distracted because she hated things going against schedule. I sang songs to her, she had to type in random songs to youtube, and id sing along and “dance” – it was great fun. Then I got up to put my banana skin in the bin, and suddenly she started playing through her phone “sex bomb” full blast. I danced to the bin…put the banana skin in the bin… tried to do a moonwalk back to faith whilst singing sexbomb… I didn’t really realise a bloke was standing watching me until I tripped over my stick, and went face first in to his crotch.

It was a running joke after that to sing sex bomb every time you go to a bin.

2) Bitch – Meredith Brooks

I used to see faith a lot when I was still at college as in some of my frees or even before college if I had a late start, Id go for coffee with her and her mum in Horsham.

most of the time if I did go for coffee with them her mum would either drive me back to college or if it was good weather they would walk me back there.

We were in her mums car – and this came on the car radio.

we both looked at eachother and started to head bang to it singing loudly with the windows down.

3) Home – Gabrielle Aplin

She always said this song sang to her, that it was a piece of music that could make her heart sing.

4) Delilah – tom jones

She talks about this in her letter to me. But whenever she was in a dark place id sing this to her because she bloody loved tom jones.

5) Holding out for a hero (shrek) – Jennifer Saunders

Shrimpy loved shrek ( as do I ) and also we both adore saunders. and abfab – obviously.

Somewhere there is a video with me, wearing a pair of underpants on the outside, with a blanket tucked in to my tshirt like a cape, “dancing like superman” to this in a physio session that we shared together. – again it was mainly to cheer her up. Physio is painful – and she hated going.

6) Faith – George Michael

Obviously I used to sing this to her – her name was faith it would have been a missed opportunity if I hadn’t. however I was adamant that it was TOM JONES That sang this originally not George Michael. Woops.

7) You Cant Hurry Love – Phil Collins

We both loved the film jumpin jack flash – theres a scene where whoopi mimes to this song.

We both loved this version though. got to love phil Collins.

8) Kiss- prince

she traumatised a poor cleaner once at crawley hospital. she was given pain relief that made her totally mouthy and not faith like at all…as although to me she was always my faithy, a damn right crazy woman, to the rest of the world a lot of the time she was shy and withdrawn faith. Anyway, that day she thrusted herself in the poor blokes face whilst singing this. Again theres a video of this somewhere

9) Feels like I’m in love – Kelly marie

Our all time fav film – imagine me and you – has this song in it. we always said if we were able bodied and not edsers we would recreate the scene in the film where this song is played.

Our favourite line of the film is “YOURE A WANKER NUMBER NIIIIIIIIIIINE ”

10) Same Love – Macklemore & Ryan Lewis (Ft Mary Lambert)

She came out last year She loved this song, and spent the entire of month of july listening to this song every single night.

11) Eden by Sara Bareilles

She always referred to heaven/afterlife as eden. She loved the idea of there being a paradise after death where she could be reunited with people she loved.
This song has nothing to do with her view of the afterlife,but she loved the lyrics and loved the song. she’d sing it to me when I was having a bad day.

12 ) Breathing Underwater – Emeli Sande

This is MY favourite song, and when I first sent her a link to it, she listened to it and called me, with it playing full volume in the background screaming down the phone “OH MY FUCKING GOD THIS SONG IS AMAZING AND ITS SO YOUR KINDA SONG AND OH GOOD LORD YOU NEED THIS SONG PLAYED EVERY TIME SOMETHING NEEDS TO BE SAID THAT PEOPLE NEED TO LISTEN TO”. I feel like she’s put this on here to remind me that every day is a miracle no matter what happens.

13) Don’t you forget about me – Simple Minds

Funny story- a friend of mine kept telling me I had to watch the breakfast club – and like a year or so later I finally watched it. Fai hadn’t seen it either – so her mum got her copy and we facetimed each other whilst watching it seperatley but together (if that makes any sense) – we were both in tears by the end of the film.

14) Macarena – Los Del Rio

Believe it or not she wants this song played at her funeral as they “carry her in” She also wants me to wear my flamingo hat. the things we do for that girl.

15) Up where we belong – Joe Cocker and Jennifer warnes.

she always said this would be her first dance at her wedding. she then said she’d never get married. we used to mime to this song in her mums car, using my walking stick and her special drinks bottle as microphones.

16) You Can Leave your hat on – Joe Cocker

Finally – the song she’d sing to me at every opportunity, which was fab, until (again a medically induced high as a kite faithy situation) she had too much meds in costa and decided to sing this to me as loud as she could whilst wearing my white bowler hat.

I wish more people knew the faith I knew. she was quite fun really was my faithy.

The main part of this post isn’t actually written by me and its one of the strangest things that will be posted on this blog.

A good friend of mine – Faith – Passed away on the 24th Feb. She was 23. This is a letter she wrote for me for when the time came. It’s in this letter – but basically she asked me to put this on here.

She was one of a kind. I wish more people knew the faith I knew. She wasnt a very open person BUT when she let you in, there was no going back, and her character was a big one.

Faithy thank you for the almost 3 years of friendship. Wish you didn’t have to leave. I’ll miss you and Love you always shrimpy xxx

So, on to the letter that my faith wrote for me.

Lans

An extra letter for my extra special girl.

From the moment you walked straight in to the closed glass door thinking it would open and made a tit of yourself I knew we would be friends for a very long time.

Lets be honest I didn’t have other friends outside our small circle and you were the only one I knew in real life. I was lonely but you made a difference and ill always be thankful for that.

we both know what it means if you’re reading this. I’m gone. I’ve gone up to the sky to the paradise that is Eden.

Now, down to business I’ve left you Mrs foggins. Keep her safe and loved and pass her on to someone else one day.

don’t mope around after me.

Life is an adventure kid, go out and live life.

Do all you can while you can.

You’re the mother of our group lets face it so i know you’ll make a wonderful mother, and whilst at the time of writing this you don’t have any kids, i hope im still here when you do have them so i can teach them all about how doors ACTUALLY WORK.

Dont let any one ever stop you from having children – we both know with our conditions itll be Interesting Having kids, but please don’t let it stop you. Any kid will be a million times blessed to have you as their parent. And of course will be very lucky to have their auntie faithy, because although I don’t get out much and im not very sociable i make a fabulous gluten-free dairy free cheesecake. And cherry fudge. I’ve left you the recipe for that too. It’s not dairy free though.

A long time ago you told me your fears and i told you mine. Thank you for trusting me and listening to me.

If ive not gone and completed my list of adventures, please do them for me. Theres only 5 of them and you know what they are.

promise me you’ll go for coffee with my mum and make sure she’s ok. (You have to say yes you promise as ill be able to haunt you now bitch)

Now at the time of this being written you havent started vlogging yet. fucking start it now if you still havent. No excuses.

Make memories.

You inspired me every day you should know that. You remained a sociable butterfly in all the shite and didn’t fall back in to the dark pit of your own brain. That takes balls so good on you.

I hope you find the right person for you. Be happy. And be YOU. You inspired me to be truthful about who I am.

You inspired me to come out in 2016. Without your support id never have done it you know.

Make sure you keep singing your heart out on buses even though you don’t have me to sing to down the phone. Sing to the camera instead. that’ll make for good vlogging entertainment just do not break the camera when chair dancing.

Remember That time in Costa when you fell off the chair, got stuck and I almost fell OUT of my wheelchair laughing? You pulled your joints out and made that poor coffee guy who came to help faint and smash out hot chocolates. At least we got free new ones (even though it really was your fault it happened)

Or what about the time you seized outside of new look and my mum reassured the passersby that you were fine it just happens to you.

Or the time you kept clucking like a chicken instead of saying “Collyers College”. You thought you were saying it right yet all that came out was “cluck cluck cluck cluck”. My Mum thought you were having some sort of stroke.

I wont ever forget the time I was having a dark day so you face timed me, i was miserable as sin, you were on a bus, so you sang “WHY WHY WHYYYY DELILAH” whilst on the bus facetiming me and that old man joined in and you got louder; and then when you finished the song the old lady said “finally the racket stops i thought the windows would shatter” it was first time i had laughed in days.

Sex bomb sex bomb plays in my head every time I put something in the bin and again that is your fault.

Since meeting you I can’t eat a milky bar without laughing I shan’t put why in this though in case my mother reads it. I had to add it though.

Dont ever call my future nieces and or nephews Anything stupid by the way. Although if you have them soon hopefully ive stopped you from chosing a stupid sounding name. Remember my rules a rock star, a pm, a teacher, a doctor, an artist and a cleaner.

I hope ive got to meet your future children. I hope ive met the person you want to marry. I hope ive given them a death threat. mess with my beans you mess with me you get me.

I wonder if you convinced me to watch a holbycity episode. If you did – well done. But i probably just watched it to shut you up about it all and bloody bernie and serena whoever they are.

I hope you read fifty shades. And watch all the films. I actually hope you watched them with me. Not in a sordid way but because you would be funny to watch it with. And I think you’d like the books.

You are Anal a Pussy after all. (Sorry I had to)

According to that physio that time you were Alandyard Pusswee . And I Fate Fight MacKraynut. Knob.

My wish for you is that you Never let your conditions dictate.

Never let it stop you.

I hope you stick to your promise about what youll eat and do on my birthday each year – don’t eat it or spend it alone though.

Send a green balloon up for me once in a while will you?

Dont forget you have to write your book. And add in a sex chapter. Itll make people laugh. Its hilarious the shit that’s gone on with you. Besides itll be so relatable for people like us edsers.

I have a list of tunes that you must listen to when you miss me. I’ve organised the site to email them to you when they’ve been told ive popped it.

I hope i managed to go to at least one of your big parties. If i havent im sorry. I hope i met your family and friends at least. I hope i didn’t chicken out. Its harder for me to meet people it’s so scary.

I’m glad you are reading this because although im not glad ive left you all, I am glad ive left you first. It would’ve been harder the other way around. You have an army behind you, i have you, the group, my parents and my 3 godparents. And although you give me the strength of an army, and your strength could carry me through anything i don’t think i could cope losing you or the other zebras in our group. It was hard losing Choochie but it would be harder to lose any one else.

A last request. I’ve asked mum to shut my Facebook a week after my departure but I need you to put this letter on your blog. Including the bits that make you look stupid. No edits. Just type it all up. Keep the goodbye letter private, Put this one out there. Give the world a thing to read from me, I want them to read it. I want them to hear the things about you that you would never boast about. I want them to hear about my lans. My beanie girl. Again you can’t not carry out my wishes – im dead ill haunt you.

#post it for the blog

You gave me happiness back and a sense of humour. I’ll always be grateful for that. Thank your for our friendship. Thank you for bringing the sunshine to my days.

For any of Lans Future children aka my future nieces and nephews I don’t know if im still around to meet you. I don’t know how old you are when this is being read to you.

You may have never met me.

But I know you’ll know about me.

Now at the time of writing this you don’t exist.

But let me tell you something.

When your mummy does decide to create life in her rather strange body, you will be very lucky to have her as your mummy. Shes younger than me, but she’s like the mother of our little group. And she makes us laugh when we are sad and hugs us when we are down and makes us smile. She takes care of us. No matter what state her health is in she will be the best mummy to you, and will always make sure you want for nothing and that you have everything because that is what she is like. You should know that your auntie faith loves you.

I hope I did meet you but if I didn’t look to the clouds and ill be there.

Love auntie faithy.

Ps I hope your mother didn’t give you stupid names. If she did feel free to poop in her shoes. Or better still piss in her hats. Then tell her auntie faith said that’s the price to pay for stupid names.

I often say that My Grandad was a man of many sides. Today, in this blog post, I’m going to focus on the side to the man that I knew. Now, Don’t get me wrong he was far from perfect He could be an arse, but despite his occasional arseholeness – I loved him and always will.

The reason for this post by the way- is actually because I came across some photographs the other day (the cats fault but that’s another post in itself) and I found pictures of my grandad I’d never seen before – and I think each photo tells a story of the man I knew and the bond we had. This blog as ever is a way of me to express myself and I want to say right now in case I get all rambley or emotional -basically what I’m trying to express is I miss my grandad and the side of him I’m honoured to have known.

Firstly- if you don’t know me in real life and you’ve just joined me here you probably wont know the relevance of the title to my grandad.

My grandad, or Jack as he was to everyone else, was a funny one. I don’t just mean funny as in odd ( although he was that too), He actually had a wicked sense of humour which I don’t think some people would have realised to look at him.
The title is in reference to something he said one christmas. My dad and I are allergic to turkey, so each Christmas we have duck. We used to see grandad on Christmas day – and whats really funny is at our house the year before he ate duck (and pork, and the WHOLE of what was on his plate, and raspberry ruffle sweets after!) – and he didn’t make any comment aside from “that was lovely can I take the [pork] crackling home”. Then the following year he asked what was for dinner… when mum said duck…. he said ” I don’t eat duck…” to which mum replied “well you ate it last year”…. and his reponse? “i didn’t know what I was eating then”…. which actually, written down doesn’t sound that funny, but coming out of his mouth and the whole context of it just caused us all to laugh- I laughed so much I cried.

His eyesight was pretty much gone by the time he went, so thinking about it he was right he didn’t know what he was eating.

Talking about his eyesight, although its not nice to mum, something that will always make me giggle is how he would use his hand like a puppet and every time mum went out the room and [in grandads eyes] nag him… he’d mock her. She almost caught him a few times, but there was nothing wrong with his hearing let me tell you that. he knew when she was about to walk in the room!

He used to bring out my cheeky side. He used to be adamant that he wouldn’t open his presents until he guessed what they were (which Is funny because he couldn’t see them anyway). We got him some highland biscuits, and he was shaking them and looked in my direction with a wicked grin and said is it something he can eat and I said quick as a flash ” yeah grandad youre ok mum didn’t make them their edible” – sorry mum, glad you found it funny though!

My grandad used to make me laugh even if I felt sad or scared or tired or grumpy.

He let me see a softer side to him. I miss him.

I miss this man right here, holding me as a baby.

I miss the way he used to grin, that special smile that would reach his quite sizeable ears and the way his eyes would crinkle as it reached them.

I miss the way he’d point at the telly and tell me that movies like shrek or whatever animation was on, was a load rubbish and that I should watch a PROPER film (a western film of some description was in grandads eyes, a PROPER film).

One of the earliest memories I have of Grandad is making mini apple pies with him. Mum and I travelled up to Nan & Grandads on the Friday, and we got out the frozen pastry that night, putting a tea towel over the top…and I’d go in to the kitchen, he’d lift me up and i’d poke it to see if It was ready yet.

I didn’t even really like apple pies but it was exciting to be making something with him.

He let me do anything I wanted in that kitchen. I created some awful concoction with all kinds of crap in – if I remember rightly it had coffee granules juice milk and grapes and all manner of disgusting things mixed together , we called it chefs surpise… poor auntie carole was the one who tested that mixture! the woman deserves a medal for doing that!

My mum had a rule when it came to me and playing as a kid- no real food when playing with toy kitchens.

So when I had a toy kitchen gifted to me , before it came to my house it was at nan&grandads. It was just Nan and Grandad… and what did grandad do? He let me play with real food in my toy kitchen. What a trouble maker… whats funny is that mum didn’t know this until a few years back, she said “I never let you do that” … No mum, you didn’t…but grandad did!

I wish more people got to see the grandad I knew.

The grandad that would laugh.

The grandad that would make me jelly and ice cream just how I liked it ( hartleys jelly pot, drain off the jelly, make a hole in the middle and put a scoop of jelly on the top and the ice cream starts to melt and run through the jellies core).

The Grandad that would hug me tight and kiss my cheek.

The Grandad that would play with me.

The Grandad that would smile and laugh when I spoke to him.

The Grandad that taught me how to bet on the horses from a toddler…(never one to stick by the rules, start them young and all that)

The man who was on the diabetic ward in hospital but had us asking the nurses if he could have a KitKat and some dairy milk – and it HAD To be those specific things…

The man who toward the end in the cold wore a hat that made him look like deputy dog.

The man who took me by the arm to walk back to my house when it was icey – and to this day I’m not sure if it was so he didn’t slip, or to make sure I didn’t slip!

The man who is pictured here – holding my special hat ,and me.

The man who would both annoy me and make me smile at the same time.

The man who yes, could be an arsehole, but ultiamtley was my grandad.

The man who one Christmas gave me this little photo to keep – which I will always treasure.

The man I loved and always will.

If I ever have a son in the far far future, their middle name will be jack. After this man who I will always love and always miss.
I didn’t realise just how much I missed him until I found those pictures.Grief is such a funny thing isn’t it? it creeps up on us when we least expect it – and just when we think we’re past it … it taps us on the shoulder. I wish he could see me now, especially as I’ll be 20 this year, I wish he could see how tall I am! I already towered over him from the age of about 10, but now I’m super tall so I wonder what he would ve said now. I miss you grandad – love you always xxx

I’ve had way too many questions flung at me from some of you lot recently so heres some answers to some of them!

I’ve only picked a few – and I try and answer them individually anyway.

Do you sleep with your bedroom door open or closed? – Closed because of the cat… although he opens it himself when hes a)being naughty or b) picking up on my health/seizures

Would you rather be attacked by a big cat or a swarm of wasps? errrm… cat! I get attacked by a big cat all the time! – (and i really bloody hate wasps!)

What is your song of the day (p.s. love you lana and love your blog!) ? – my song of the day today is Lay All Your Love On Me – ABBA (p.s. love you too and thank you My lovely)

We know you love chicken – so What do you dip a chicken nugget in? I DONT DIP A NUGGET IN ANYTHING! I DONT DO DIPS! IT WOULD SPOIL IT !

What 10 movies could you watch repeatedly and still adore ? Moulin Rouge, Mamma mia, Love Actually, The Lakehouse, Bridget jones Series (sorry thats cheating i know but HA!), Harry potter (any of them!), Lion King, Lady in the van, beauty and the beast, Hocus Pocus. (theres more but you said 10!!!)

Do you sing in the shower? Doesnt everyone?!

What did you want to be when you were a kid?! – A nurse or a Teacher

What were your hobbies as a kid and how did your EDS affect them back then (before you got worse!) – I used to do football, Dancing (ballet and stuff) – I stopped because of my joints and because of stuff that was happening at the time. I also did Brownies and Guides and i miss it so bloody much but im not sure i could cope with it all now in all honesty!

Can you swim or do you dislocate? I cant swim no and i havent attempted it since my conditons deterioated.

Can you knit or crochet Yet Lan? I can KIND of knit, im getting there SLOWLY!

Are you religious? whats your religion ? I was christenned as a kid and stuff but I think I’m “an explorer of faith” at the moment. A book review will be posted soon and i explain more about my religious views then.

How many times a week do you seizure? Too many! I seizure EVERY SINGLE DAY.

Can you bring back Story Time with Lana pleaaaaaaaaaaaaaaaaaaaaaaaaaaaase? – well ACTUALLY you’re in luck I am bringing it back this year!

We’re already 8 days in to 2017. Time is already flying by – or is that just me?!

I started the year with an allergic reaction… followed by flare ups… hospital trips and ofcourse AN AMBULANCE.

Now, I think I’m “normal person sick” on top of everything else going on. I just hope its not the germs that the woman in the hospital had (she sat practically on my lap to chat to me and then told me she has a highly contagious throat infection- cheers for that!)

ARGH

you’d think I could handle being ill, but normal person ill ON TOP of my Chronic illnesses is just too much for me to handle sometimes!

Its like C’MON WORLD WHAT ARE YOU DOING TO ME!

ANYWAY! Some posts are coming your way in a few days and a vlog or two will be on my youtube channel too!